Cystic Fibrosis Foundation

Cystic Fibrosis Foundation
Founded December 16, 1955 (1955-12-16)[1]
13-1930701[2]
Legal status 501(c)(3) nonprofit organization[3]
Focus Cystic fibrosis
Location
Catherine C. McLoud[4]
Preston W. Campbell, III, M.D.[4]
Chair, Adult Advisory Council
 KC White[5]
Subsidiaries Cystic Fibrosis Patient Assistance Foundation, Cystic Fibrosis Foundation Therapeutics[2]
Revenue (2016)
$192,528,975[2]
Expenses (2016) $299,650,531[2]
Employees (2016)
731[2]
Volunteers (2016)
250,000[2]
Website www.cff.org
Formerly called
 National Cystic Fibrosis Research Foundation[6]

The Cystic Fibrosis Foundation (CFF) is a 501(c)(3) non-profit organization in the United States established to provide the means to cure and control cystic fibrosis (CF). The Foundation provides information about cystic fibrosis and finances CF research that aims to improve the quality of life for people with the disease. The Foundation also engages in legislative lobbying for cystic fibrosis.[7]

History

The Foundation was established in 1955 by a group of volunteers in Philadelphia, Pennsylvania.

In addition to providing grants for research into cystic fibrosis and supporting clinical trials, the foundation promotes and accredits 115 specialized centers for treatment of individuals with cystic fibrosis. The Foundation has over 80 chapters and offices across the United States.

Before it began using the current name, the organization was known as the "National Cystic Fibrosis Research Foundation".[6]

In 1989, scientists working for the Cystic Fibrosis Foundation discovered the gene that causes cystic fibrosis, considered the key to developing a cure for cystic fibrosis.

From 1982 until 1999, sports journalist Frank Deford served as chairman of the Foundation.

The Cystic Fibrosis Foundation has been a pioneer of cystic fibrosis treatment, having played a major role in the development and use of five FDA-approved therapies, including ivacaftor (Kalydeco).[7]

In 2014, the Cystic Fibrosis Foundation sold the rights to the royalties of the drugs for $3.3 billion, twenty times the Foundation’s 2013 budget.[8][9]

Present day

Currently the Foundation operates out of Bethesda, Maryland. Preston Campbell, M.D. is the active president and CEO of the organization.[10]

Events

The Foundation hosts several philanthropic events both locally around the chapters and nationwide. One of the biggest signature events is the Great Strides walk, established in 1989.It is a sponsored walk akin to Race for the Cure, where participants walk 10 kilometers (6.2 mi) to raise money to support research for cystic fibrosis. There are Great Strides walks in over 560 locations throughout the country.Great Strides has succeeded in raising over $180,000,000 for cystic fibrosis research.

Some other signature events include the CF Cycle for Life, CF Climb, Xtreme Hike, and Team CF. The list of national events includes Ultimate Golf Experience, American Airlines Celebrity Ski, and Volunteer Leadership Conference. Individual chapters may host their own events which may include, but are not limited to, fishing events, dinner dance events, golf tournaments, and finest events. [11]

References

  1. ↑ "Cystic Fibrosis Foundation". Entity Search. Division of Corporations. Delaware Department of State. Retrieved May 6, 2018.
  2. 1 2 3 4 5 6 "Form 990: Return of Organization Exempt from Income Tax". Cystic Fibrosis Foundation. Guidestar. December 31, 2016.
  3. ↑ "Cystic Fibrosis Foundation". Exempt Organization Search. Internal Revenue Service. Retrieved May 6, 2018.
  4. 1 2 "Board of Trustees". Cystic Fibrosis Foundation. Retrieved May 6, 2018.
  5. ↑ "Advisory Council". Cystic Fibrosis Foundation. Retrieved May 6, 2018.
  6. 1 2 Dorothy H. Andersen papers, 1930-1965, Columbia University Libraries, no date. Retrieved January 15, 2014.
  7. 1 2 "About the Cystic Fibrosis Foundation". Cystic Fibrosis Foundation. Retrieved 2013-02-19.
  8. ↑ Andrew Pollack (November 19, 2014), Deal by Cystic Fibrosis Foundation Raises Cash and Some Concern, New York Times, retrieved July 19, 2015
  9. ↑ Joseph Walker; Jonathan D. Rockoff (November 19, 2014), Cystic Fibrosis Foundation Sells Drug’s Rights for $3.3 Billion: The Biggest Royalty Purchase Ever Reflects Group’s Share of Kalydeco Sales, Wall Street Journal, retrieved July 19, 2015
  10. ↑ "Message from the President". Cystic Fibrosis Foundation. Retrieved 2013-02-13.
  11. ↑ "Participate in an Event | CF Foundation". www.cff.org. Retrieved 2016-09-19.


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